Umbilical Cord Blood Storage for the Public Good
Carol Petrozella, RN, EdD

Should health care providers promote the public storage of umbilical cord blood through the National Donor Marrow Program? Do nurses and other health care providers have a public responsibility to educate women of childbearing age and pregnant women about the benefits of public storage of their babies’ cord blood? Should informed consent be obtained as part of the pre-natal record?  Should all hospitals and birthing center have personnel trained to collect cord blood? What about birthing centers and home deliveries, should those sites also participate in public cord blood storage? Should there be a charge to collect the blood and the maternal labs that are required? Should the family be able to store the blood at public expense, just in case? Should In vitro fertilization become a way to guarantee a donor?  Should health care providers charge for the collection process?  These are a few of the ethical issues that confront health care providers and health care institutions currently.

 In 2005 Congress passed the Stem Cell Therapeutic and Research act of 2005. Public Law 109-129, December 20, 2005 states: “An act to provide for the collection an maintenance of human cord and blood stem cells for the treatment of patients and research, and to amend the Public Health Service Act to authorize the C.W. Bill Young Cell Transplantation Program.” Cord blood collected is available to transplantation centers. The act also makes cord blood that is “not appropriate for clinical use, available for peer-reviewed research.” This act also provides “for the collection and storage of cord blood units for a family where a first-degree relative has been diagnosed with a condition that will benefit from transplantation. The family may elect transfer the blood the CW. Bill Young Cell Transplantation Program.
Although the original act provided for use by the family  “As of 2007, contracts of the largest cord blood banks do not explicitly state that the cord blood belongs to the donors and child.” (http://en.wikipedia.org/wiki/Cord_blood_bank)
 The National Marrow Donor Program makes the following statements regarding public storage:
            It is available to any patient in need of a transplant.
If it does not meet the criteria for transplant, it may be used by researchers in the search for new and more effective medical uses for cord blood cells.
            It is not reserved for your family’s private use
There is no cost to you. Public cord blood banks cover the cost of processing and storing your baby’s donated cord blood. http://www/,arrp/prg/DONOR/FAQs?Cord_Blood_FAWs/index.html

Private storing of cord blood is not recommended by the American Academy of Pediatrics unless the family has a current need or very high potential risk. Private companies term refer to non-risk families as having “biological insurance.” A child’s own cord blood is rarely suitable. Private storage costs are in the thousands. (http://en.wikipedia.org/wiki/Cord_blood-bank & http://www.nationalcordbloodprogram.org/donation/public_vs_provat_donation.html)

To date the number of Florida hospitals participating in collecting cord blood for the National Bone Marrow Program is limited to nine. Nationally the number is nineteen. There are no hospitals participating in the South Florida area. A list of participating hospitals for the National Marrow Donor Program can be found at http://www.marrow.org/About/NMDP_Network?Cord-Blood_Banks/CB_Paricipating_Hospitals/nmdp_co

Cyrobranks International participates in the National Bone Marrow Program and other international registries. It accepts donations from anywhere within the continental United States.  Donors must register directly with Cryobanks International between their 28th and 35th week of pregnancy. The informed consent form for donation of cord blood is published online with all pertinent information. Training materials are available free of charge to the health care provider. The collection kit is sent to the mother. The kit must be picked up by Cyrobanks within two hours after the birth of the newborn.
. http://www.cryo-intl.com/enroll_donate.html)
 
The Health Resources and Services Administration (HRSA), part of the U.S. Department of Health and Human Services, recently awarded funds [2006] totaling $12 million to the first group of umbilical cord blood banks to begin collections for the National Cord Blood Inventory (NCBI). An additional $50 million was awarded to improve and promote transplantation. [this includes other forms of transplantation not just cord blood use] The NCBI will collect and maintain high-quality cord blood units and make them available for transplantation through the newly created C.W. Bill Young Cell Transplantation Program.
http://newroom.hrsa.gov/rleases/2006/blood-units.htm

Indiana has provided for a program for the statewide collection of cord blood from pregnant women upon delivery of a newborn. In a recent House Enrolled Act, No. 1348, Indiana is asking that before September 1, 2007 their Medicaid plan be amended or waived to provide for reimbursement of health care providers “from a pregnant Medicaid recipient upon the birth of a newborn.” In addition, a report must be made  before November 1, 2007 describing progress made toward “progress in developing a program for the statewide collection of cord blood from pregnant women upon delivery of a newborn.” Indiana House Enrolled Act No. 1348.

The expansion of the National Marrow Program and the National Cord Blood Inventory Programs are necessary. Health care providers must strive to increase the storage of genetically diverse units of cord blood. Private storage is very costly and does not often meet the needs of individual families unless they have specific high risk factors. A national registry, which participates internationally, is open to all and increases the chance for a donor match. It is important to continue to study umbilical cord blood through peer- reviewed research.

            Education must be available. Health care providers should be educated regarding the benefits and research being conducted. Training in the proper collection of umbilical cord blood should be included in-service workshops and orientation to Labor and Delivery areas. A process for educating providers in birthing centers and home deliveries must be developed. Fees for collection of the cord blood should be waived for the public good. Maternity hospitals should be encouraged to actively participate in the National Marrow Donor Program. Literature should be available in all settings providing pre-natal care. Pre-natal care providers should be encouraged to discuss donation with their clients during prenatal visits and have consent forms available.  Informed consents should be part of the pre-natal record.

Carol Petrozella is the Director of the Miami Dade College Institute for Ethics in Health Care. The web site can be accessed at http://www.mdc.edu/medical/Bioethics/default.asp

Bibliography

Cord Use: http://www.corduse.com

Cyrobanks International http://www.cryo-intl.com/enroll_donate.html

HRSA Awards $12 Million to Collect, Maintain Cord Blood Units for National Inventory
http://newsroom.hrsa.gov/releases/2006/blood-units.htm

Indiana House Enrolled Act No. 1348, 2007

Life South Community Blood Centers: http://www.lifesouth.org/LifeCord.html

National Cord Blood Program: New York Blood Center: http://nationalcordbloodprogram.org

National Bone Marrow Donor Program http://www.marrow.org/index.html.
Regenerative Medicine 2006. Department of Health and Human Services. August 2006. http://info/scireport/2006report
Stem Cells: Scientific Progress and Future Research Directions. Department of Health and Human Services. June 2001. http://stemcells.nih.gov/info/scireport/2001report

Stem Cell Therapeutic and Research Act of 2005 Public Law 109-129 December 20, 2005 http://www.nationalcordbloodprogram.org/cord%20blood%20public%20law%20109-129%20(2).pdf